Decision Maker Response

John Roberts’s response

John Roberts

President, Board of Directors, OPTN/UNOS

John Roberts

President, Board of Directors, OPTN/UNOS

May 26, 2013 — Thank you for your interest in Sarah Murnaghan and her need for a lung transplant. Nearly 1,700 people nationwide await a life-saving lung transplant, including 30 children age 10 or younger. Unfortunately, due to the shortage of organ donors, many people must wait months or years for a transplant opportunity and some patients die without a transplant. There are another 117,000 people on the organ transplant waiting lists who are also in need.

How can you help? Please keep in mind that every transplant begins with someone's selfless commitment to save the lives of others through organ donation. While we continue to make policy that best meets the needs of all candidates, we hope you will help meet the needs of all who continue to wait by making and sharing a personal commitment to donation. Please register to be a donor at your state's registry and share your commitment. Here is a link that will allow you to access your state's registry: http://www.organdonor.gov/becomingdonor/stateregistries.html?gclid=CP_9pfP5s7cCFYiDQgodoXMAVA. You can also register and share your commitment through http://www.facebook.com/help/organ-donation.

United Network for Organ Sharing (UNOS) manages the national Organ Procurement and Transplantation Network (OPTN) under federal contract. The OPTN is charged with developing national policies to distribute available organs equitably among all waiting list candidates.

The biological needs and circumstances of candidates younger than age 12 are different from either adolescent or adult candidates. One key difference is the size and lung capacity of donors and patients in these two age ranges. For this reason, the organ allocation policy differs for these groups of candidates and is designed to suit their unique needs. Children younger than age 12 have priority for all donors of similar age and size within a 1,000-mile radius before any older candidates would be considered. In addition, if their transplant center determines that the candidate's condition warrants a reduced size transplant from an adult donor, these children will have access to adult organs once they are offered to adolescents and adults in the same allocation zone. In 2012, there were 460 pediatric organ donors including 114 aged 6-10 years. Although the number of lung donors in that age group was only 11, that number likely reflects low demand (2 lung transplants in recipients aged 6-10) as much as supply.

A request to rank a patient under 12 in the allocation sequence for adolescents and adults is not within the scope of the existing thoracic allocation exemption options (the option available in this setting is to grant a Priority 2 patient a Priority 1 status). The OPTN cannot create a policy exemption on behalf of an a individual patient, since giving an advantage to one patient may unduly disadvantage others. However, the network regularly reviews the equity of the organ allocation system to be sure that no group of candidates is treated unfairly. The OPTN will address public questions and concerns raised with the lung allocation policy, with the goal of improving the policy for all in need.